Recently, Massachusetts Governor Charlie Baker made a major revision to a bill that would have supported insurance coverage for patients whose Lyme disease symptoms persist or become worse despite short-term antibiotic treatment. As reported by the Boston Globe, “Baker has until midnight Thursday [7/28/2016] to sign or veto the legislation or to let it become law without his signature.”

In Baker’s revision to the proposed legislation, extended antibiotic treatment would be covered–but only when prescribed by rheumatologists, neurologists or infectious disease doctors. If passed, the law, therefore, would disallow antibiotic therapy to be prescribed by physicians most likely to treat patients who suffer from persistent Lyme disease–tickborne disease specialists who belong to the International Lyme and Associated Diseases Society (ILADS). Neurologists and rheumatologists who suspect Lyme or another infectious disease are most likely to refer their patients back to their general practitioners for a referral to a Lyme or an infectious disease specialist.

I reached out to Baker’s office via email and was told that the governor was not available for comment; however, a spokesperson replied that “Governor Baker supports comprehensive coverage and access to Lyme Disease treatment. While the administration acknowledges that long-term antibiotic therapy is not clinically recognized as an appropriate form of treatment at this time, we look forward to maintaining an open dialogue on this issue with the Legislature, medical community and advocates to ensure we are implementing the best policies to keep Massachusetts patients safe.”

Objectively, the claim that “long-term antibiotic therapy is not clinically recognized as an appropriate form of treatment at this time” is false.

While this is the position of the Infectious Diseases Society of America (IDSA), whose treatment guidelines are supported–to great controversy–by the U.S. Centers for Disease Control and Prevention (CDC), ILADS, the professional medical association dedicated to Lyme disease, advocates treating Lyme on a patient-by-patient basis, including prolonged antibiotic treatment therapy. Dr. Daniel Cameron, lead author of the ILADS treatment guidelines published in 2014, writes:

If the initial course of antibiotic retreatment does not produce a complete response, clinicians should consider various options. Patients who had an incomplete response with one agent may be responsive to another; thus, switching agents may prove successful. Alternatively, combination therapy may be appropriate in select patients. Examples include those with known or suspected co-infections and patients who had incomplete responses to single agent therapy.

The problem with Baker’s legislative preference is that it is hypocritical in two obvious ways:

First, according to the given statement, Baker has been persuaded to believe that prolonged antibiotic treatment does not work–yet his law would give three medical specialists the freedom to prescribe long-term antibiotics to Lyme patients: rheumatologists, neurologists, and infectious disease specialists. Why, if the change was made on the basis of prolonged antibiotic therapy being ineffective, would he allow all these specialists but not Lyme disease specialists to prescribe longer-term antibiotics? This hypocrisy reveals a clear bias toward the IDSA opinion and against the opinion of ILADS, which represents exclusively medical doctors who treat Lyme and other tickborne diseases.

Second, most infectious disease specialists adhere to IDSA treatment guidelines and so most would not readily administer longer-term antibiotics–and so the governor’s decision to leave such a decision to an infectious disease specialist appears to undo itself. This provision is akin to prohibiting drinking alcohol except to those who have sworn never to have had a drink of it.

I asked whether Baker had considered any dissenting opinions. His spokesperson wrote that “Several provider and physician organizations wrote in on this and reiterated that this is not a universally recognized form of treatment – see attached, thanks – have a nice weekend.” He attached letters from the following:

A Boston Globe article published this morning revealed that Baker is a former health insurance executive, having served as the CEO of Harvard Vanguard Medical Associates. Now known as Harvard Pilgrim Health Care, this insurance company is one of several that make up Atrius Health Medical Practices. When I asked Baker’s spokesperson why he chose to strike proposed mandatory health insurance coverage for Lyme disease treatment by Lyme specialists, his spokesperson provided the documents linked above. One of these is a letter from Atrius Health.

Some of the reasons cited in these letters for not prescribing longer-term antibiotics for Lyme include placing patients at risk for “allergic reactions, bloodstream infections as a complication of indwelling intravenous catheter, disruption of normal microbiota, and development of antibiotic-induced diarrhea.” The antibiotic-related risks apply, as well, to any prolonged antibiotic treatments, such as those commonly prescribed by dermatologists for acne and by urologists for long-term uninary tract infections.

The MIDS also states a concern about the overprescription of antibiotics creating antibiotic-resistant “superbugs,” which is a viable public health concern. However, this concern is stated almost exclusively in the context of Lyme disease, and used as an argument against treating Lyme. The doctors and public health officials who cite is rarely, if ever, discuss longer-term antibiotic treatments of acne, bladder infections, tuberculosis, etc. Why?

Lyme disease is caused by Borrelia burgdorferi, a syphilis-like spirochete type bacterium. While probably–hopefully–unrelated, it is a truly peculiar coincidence that today, in 2016, the CDC and its favored Infectious Diseases Society of America prohibit antibiotic treatment of Lyme disease even when patients frequently recover significantly from their Lyme symptoms as a result of antibiotic treatment.

From 1932 until 1972, the federal Public Health Service, the precursor to today’s CDC, conscripted a great number of medical doctors to willfully abandon their Hippocratic oath to “do no harm” and surreptitiously monitor the declining health–in many cases to the point of death–of black men who had syphilis. These men were not told by their doctors that they had syphilis. They could have been cured by a simple penicillin shot but instead were used as human laboratory animals who suffered and/or died as a direct result of medical doctors and the Public Health Service’s inhumane and grossly unethical protocols.

Today, the CDC asks doctors to refuse to treat Lyme disease patients for longer than 28 days even when the treatment returns their health and wellness. The doctors who refuse to let their patients suffer needlessly are persecuted. The coincidence of Lyme’s relationship to syphilis and the prohibition of treatment is disturbing.

To this day, the CDC website includes a disturbingly cold timeline of the Tuskegee experiment, asking “What Went Wrong?” (See above screen capture from the CDC.gov website.)

The answer it gives: “an Associated Press story caused a public outcry.”

The correct answer is that the study was, to be blunt, evil, and it never should have happened. That is not a perspective shared by the CDC according to material on its website.

In cases of every illness other than Lyme disease, the risks are never used to deny access to treatment for those patients; however–only to Lyme disease patients. Such risks typically would be weighed against benefits of treatment and severity of illness: in a 2014 survey of chronic Lyme disease patients, LymeDisease.org reported that chronic Lyme patients report worse health and a lower quality of life than people who have multiple sclerosis, systemic lupus, heart attack and even congestive heart failure. Yet the IDSA and its members regard the risks of treating Lyme disease for longer than 28 days with doxycycline not to be worth patient risk; whereas, this is done commonly for acne, generally a disease that causes only cosmetic damage. Author Amy Tan wrote in the New York Times in 2013 that “I have my life back but I am not cured. If I go off antibiotics, the symptoms march back.”

This has been my experience to date, as well, and that of countless people who have been diagnosed with Lyme disease–yet authorities such as Governor Baker for specious reasons have determined that 1) those who treat infectious diseases but argue against treating Lyme disease know better than patients and than those who exclusively treat Lyme disease; 2) that those who treat Lyme disease exclusively–board-certified medical doctors–all are wrong when the members of a competing medical association all are correct; 3) all peer-reviewed, published research numbering over 700 articles should be discarded because the preferred medical organization rejects it for unspecified reasons; and 4) that those who experience Lyme disease themselves do not know their bodies as well as IDSA member doctors do, and that in every case remission of symptoms while prescribed antibiotics is an imagined phenomenon.

I pointed out, which I have done before, that the NEJM article was limited to treating Lyme patients with two select antibiotics for an arbitrarily determined three-month term; its conclusions, therefore, are limited and do not account for other antibiotics not tested, for other drug combinations, for newer modes of antibiotic administration such as pulsed dosing, or for terms longer than three months. In fact, many Lyme patients experience no improvement in symptoms for six months or longer–which was my personal experience.

I asked whether Governor Baker had considered these points, or letters submitted by Lyme disease specialists, support organizations or patients in his decision.

Proper Testing and following guidlines patients should be fully tested (More than once over a 12 month period if negative first or more time results ) then following proper guidlines for “Lyme” “Chronic Lyme” and the sweeping wave of multiple ” Mycobacterial and Mycoplasma ” infections and coinfections – as many can and do have multiple infections that Tick’s and other insects and means of transmission is possible ! ANY qualified MD able to read these diagnostic tests ( Most are spelled out by testing lab’s ) should be able to begin treatments Immediately, the longer term cost of care and probability of disability and death would be far to costly to wait – and if needed calling in a specialist to outline treatment protocol could be in order if MD feels he is not fully qualified – this would ease patients burden and educate MD’s that are Un-aware of proper protocol’s – this is common sense – your outline would disable many and become far more costly to both the patient and for treatments not to mention again Disability

Yes, thankfully. I hope that when these sorts of corrupt actions happen in other states, those states and nationally those who have the means will fight back as competently as happened in Massachusetts.

For now, the U.S. has a constitutional crisis and we are on the verge of losing all of our rights and freedoms, and many of us could lose our citizenships or even our lives depending how this goes.